Investigating psoriasis awareness among patients in Italy: validation of a questionnaire.

OBJECTIVE Psoriasis can have a profound impact on quality of life (QoL) and an awareness of the processes of the disease and its treatment is important in coping with symptoms. Patients do not always understand the potential consequences of their disease and the wide range of effective treatment strategies now available. We designed and validated a questionnaire to investigate patient awareness and understanding of psoriasis including pathogenesis, diagnosis, prognosis and treatment. PATIENTS AND METHODS This was a multicentre, cross-sectional investigation involving 14 psoriasis referral centres in Italy. The focus group technique was used by a panel of experts in psoriasis, to draw-up a list of questions exploring pathogenesis, diagnosis, prognosis, factors influencing clinical course of psoriasis as well as QoL issues and sources of information on their condition. Psychometric properties of the questionnaire were tested on a sample of 240 adult patients with psoriasis (including treatment-naïve and -experienced patients). RESULTS The mean age of patients was 50.3±14.9 years and 34.2% were female. The median time from diagnosis was 13.7 years (IQR 7.3-23.2). The Cronbach alpha was 0.77 and all items showed higher correlations within their own dimensions than to other dimensions. Each domain of awareness was well represented by a single dimension. Mean overall awareness was 59.7±13.1 on a 100-point scale. CONCLUSIONS Our questionnaire was valid in assessing patient awareness in five relevant areas of psoriasis, and can be useful in both the clinical setting and research studies to evaluate patients' knowledge of psoriasis better, with the final aim of reducing the burden of this chronic condition.

[1]  S. Burke,et al.  Partnering with diabetes educators to improve patient outcomes , 2014, Diabetes, metabolic syndrome and obesity : targets and therapy.

[2]  A. Wahl,et al.  Psoriasis Patients' Knowledge about the Disease and Treatments , 2013, Dermatology research and practice.

[3]  K. Roach,et al.  A pre-test post-test study of a brief educational intervention demonstrates improved knowledge of potential acute myocardial infarction symptoms and appropriate responses in cardiac rehabilitation patients. , 2013, Australian critical care : official journal of the Confederation of Australian Critical Care Nurses.

[4]  S. Boren,et al.  Reducing the risks of diabetes complications through diabetes self-management education and support. , 2013, Population health management.

[5]  J. Ard,et al.  Twenty-First Century Behavioral Medicine: A Context for Empowering Clinicians and Patients With Diabetes , 2013, Diabetes Care.

[6]  R. Bromme,et al.  Patients' medical knowledge and health counseling: what kind of information helps to make communication patient-centered? , 2012, Patient education and counseling.

[7]  Jerry Tan,et al.  A patient decision aid for psoriasis based on current clinical practice guidelines. , 2012, Archives of dermatology.

[8]  H. Orzechowski,et al.  S3 – Guidelines on the treatment of psoriasis vulgaris (English version). Update , 2012, Journal der Deutschen Dermatologischen Gesellschaft = Journal of the German Society of Dermatology : JDDG.

[9]  C. Di Pietro,et al.  Participation, satisfaction and knowledge level of patients with cutaneous psoriasis or psoriatic arthritis , 2011, Clinical and experimental dermatology.

[10]  M. Rothberg,et al.  Patients' knowledge of risk and protective factors for cardiovascular disease. , 2011, The American journal of cardiology.

[11]  C. Di Pietro,et al.  Effectiveness of an empowerment-based intervention for psoriasis among patients attending a medical spa. , 2011, European journal of dermatology : EJD.

[12]  K. Papp,et al.  A Canadian online survey to evaluate awareness and treatment satisfaction in individuals with moderate to severe plaque psoriasis , 2010, International journal of dermatology.

[13]  H. Lui,et al.  Treatment Decision Needs of Psoriasis Patients: Cross-sectional Survey , 2010, Journal of cutaneous medicine and surgery.

[14]  Luis Puig,et al.  Psoriasis and systemic inflammatory diseases: potential mechanistic links between skin disease and co-morbid conditions. , 2010, The Journal of investigative dermatology.

[15]  C. Di Pietro,et al.  Measuring empowerment in patients with psoriasis: the Psoriasis Empowerment Enquiry in the Routine Practice (PEER) questionnaire. , 2010, European journal of dermatology : EJD.

[16]  S. Feldman,et al.  Conversations on psoriasis – what patients want and what physicians can provide: A qualitative look at patient and physician expectations , 2010, The Journal of dermatological treatment.

[17]  P. Gisondi,et al.  Efficacy of a Single Educative Intervention in Patients with Chronic Plaque Psoriasis , 2009, Dermatology.

[18]  B. Riegel,et al.  The effect of a short one-on-one nursing intervention on knowledge, attitudes and beliefs related to response to acute coronary syndrome in people with coronary heart disease: a randomized controlled trial. , 2009, International journal of nursing studies.

[19]  W. Santamore,et al.  Cardiovascular Disease Knowledge and Risk Perception Among Underserved Individuals at Increased Risk of Cardiovascular Disease , 2008, The Journal of cardiovascular nursing.

[20]  Richard H Osborne,et al.  The Health Education Impact Questionnaire (heiQ): an outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions. , 2007, Patient education and counseling.

[21]  E. Christophers Comorbidities in psoriasis , 2006, Clinics in dermatology.

[22]  N. Tahir,et al.  Risk factor awareness and secondary prevention of coronary artery disease: are we doing enough? , 2006, Interactive cardiovascular and thoracic surgery.

[23]  N. Chaturvedi,et al.  Knowledge of modifiable risk factors of heart disease among patients with acute myocardial infarction in Karachi, Pakistan: a cross sectional study , 2006, BMC cardiovascular disorders.

[24]  H. Richards,et al.  Adherence to treatment in patients with psoriasis , 2006, Journal of the European Academy of Dermatology and Venereology : JEADV.

[25]  Ö. Aydemir,et al.  Developing a quality of life instrument in patients with psoriasis: the Psoriasis Quality of Life Questionnaire (PQLQ) , 2006, International journal of dermatology.

[26]  L. Nygren,et al.  Psoriasis care consumption and expectations from a gender perspective in a psoriasis population in northern Sweden. , 2005, Acta dermato-venereologica.

[27]  T. Strine,et al.  The impact of formal diabetes education on the preventive health practices and behaviors of persons with type 2 diabetes. , 2005, Preventive medicine.

[28]  J. Koo,et al.  Quality-of-life issues in psoriasis. , 2004, Dermatologic clinics.

[29]  P. Boynton,et al.  Administering, analysing, and reporting your questionnaire , 2004, BMJ : British Medical Journal.

[30]  Trisha Greenhalgh,et al.  Selecting, designing, and developing your questionnaire , 2004, BMJ : British Medical Journal.

[31]  M. Goodfield,et al.  Objective assessment of compliance with psoriasis treatment. , 2004, Archives of dermatology.

[32]  Malinda Peeples,et al.  Diabetes Self-Management Education Core Outcomes Measures , 2003, The Diabetes educator.

[33]  Thomas Bodenheimer,et al.  Improving primary care for patients with chronic illness. , 2002, JAMA.

[34]  L. Erhardt,et al.  PUBLIC PERCEPTIONS OF CARDIOVASCULAR RISK IN FIVE EUROPEAN COUNTRIES: THE REACT SURVEY , 2002, International journal of clinical practice.

[35]  N. Ali Prediction of Coronary Heart Disease Preventive Behaviors in Women: A Test of the Health Belief Model , 2002, Women & health.

[36]  A. Stewart,et al.  Chronic Disease Self-Management Program: 2-Year Health Status and Health Care Utilization Outcomes , 2001, Medical care.

[37]  R. Kravitz,et al.  Engaging patients in medical decision making , 2001, BMJ : British Medical Journal.

[38]  M. Johannesson,et al.  Health-related quality of life in patients with psoriasis and atopic dermatitis measured with SF-36, DLQI and a subjective measure of disease activity. , 2000, Acta dermato-venereologica.

[39]  I. Wiklund,et al.  The burden of psoriasis: a study concerning health-related quality of life among Norwegian adult patients with psoriasis compared with general population norms. , 2000, Journal of the American Academy of Dermatology.

[40]  M. Joffres,et al.  Knowledge and awareness of risk factors for cardiovascular disease among Canadians 55 to 74 years of age: results from the Canadian Heart Health Surveys, 1986-1992. , 1999, CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne.

[41]  X. Badia,et al.  Measuring health‐related quality of life in patients with mild to moderate eczema and psoriasis: clinical validity, reliability and sensitivity to change of the DLQI , 1999, The British journal of dermatology.

[42]  D M Reboussin,et al.  Psoriasis causes as much disability as other major medical diseases. , 1999, Journal of the American Academy of Dermatology.

[43]  Griffiths,et al.  Clinical measures of disease severity and outcome in psoriasis: a critical appraisal of their quality , 1999, The British journal of dermatology.

[44]  D. Fortune,et al.  Quality of life in patients with psoriasis: the contribution of clinical variables and psoriasis-specific stress. , 1997, The British journal of dermatology.

[45]  Tham Sn,et al.  A questionnaire-based survey of patients' knowledge of psoriasis at the National Skin Centre. , 1995 .

[46]  D. Cella,et al.  Developing and evaluating cross-cultural instruments from minimum requirements to optimal models , 1993, Quality of Life Research.

[47]  K. Lorig,et al.  Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health benefits while reducing health care costs. , 1993, Arthritis and rheumatism.

[48]  M. Osler,et al.  Knowledge, Attitudes and Cardiovascular Risk Factors in Danish Adults , 1992, Scandinavian journal of social medicine.

[49]  V. Doherty,et al.  Psoriasis: an audit of patients' views on the disease and its treatment , 1992, The British journal of dermatology.

[50]  A. Layton,et al.  Level of knowledge and information sources used by patients with psoriasis , 1991, The British journal of dermatology.

[51]  D. Luscombe,et al.  Validation of Sickness Impact Profile and Psoriasis Disability Index in psoriasis , 1990, The British journal of dermatology.

[52]  B. Strober,et al.  Consensus guidelines for the management of plaque psoriasis. , 2012, Archives of dermatology.

[53]  P. Gisondi,et al.  Insufficient knowledge among psoriasis patients can represent a barrier to participation in decision-making. , 2006, Acta dermato-venereologica.

[54]  Margaretha Uttjek Psoriasis care consumption and consequences of having psoriasis in everyday life , 2006 .

[55]  C. Barbaranelli,et al.  Psychometric properties of the Dermatology Life Quality Index (DLQI) in 900 Italian patients with psoriasis. , 2005, Acta dermato-venereologica.

[56]  R. Stern,et al.  Members of the national psoriasis foundation: more extensive disease and better informed about treatment options. , 2005, Archives of dermatology.

[57]  Joseph C. Cappelleri,et al.  Assessing the clinical significance of single items relative to summated scores , 2002 .

[58]  Y. Tay,et al.  A questionnaire-based survey of patients' knowledge of psoriasis at the National Skin Centre. , 1995, Annals of the Academy of Medicine, Singapore.

[59]  G. Kent,et al.  The relationship between disease severity, disability and psychological distress in patients undergoing PUVA treatment for psoriasis. , 1994, Dermatology.